Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

I decided it was time to start. I also thought it would help with my skin issues, which it hasn't.

What specific skin issues have you experienced with HIV? Two of my Asian friends both describe having major skin issues, not from side effects from meds but from the virus itself. They both had to go to dermatologists. One of them always had bad skin, serious acne before and the HIV exacerbated it . The other one said he never had skin issues before but after infection he started having all sorts of problems. I understand that rash is a side effect of some of the meds so when you started did your skin get even worse or did it just not get any better?

There's a huge correlation. I think there's been a study or two on the subject.

There was actually a documentary about it called "Meth". I've never done Meth but to hear it from those guys they got so horny that they didn't care who fucked them or how just as long as it happened. One partner wasn't enough either so at that point it's like playing Russian Roulette.

What specific skin issues have you experienced with HIV? Two of my Asian friends both describe having major skin issues, not from side effects from meds but from the virus itself. They both had to go to dermatologists. One of them always had bad skin, serious acne before and the HIV exacerbated it . The other one said he never had skin issues before but after infection he started having all sorts of problems. I understand that rash is a side effect of some of the meds so when you started did your skin get even worse or did it just not get any better?

Extremely dry flaky skin. This started well before meds, so it wasn't med induced. I consulted with an HIV experienced dermatologist, the first words in his report to my GP were something like "As you know, HIV infection causes many immunological changes..." Just something I've learned to live with.

Granny60

Started Meds 2 months after diagnosis after all genotype testing was in. Undiagnosed for years. went through 11 doctors and 2 hospitals who all kept saying the same thing. The reason I was dying and had become a bed ridden invalid was because I had to have some type of cancer and they couldn't find it. You don't want to know how many tens of thousands of dollars in biopsies and scans and tests I had. After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

Really, one in 400,000 ? If you received your transfusion in the early 80s, in some countries that didn't screen their bloody supply, your chance was closer to 50%.

Anyway, given the current prevalence of rate of HIV (1 in 300 people in the US), I wonder how doctors could justify not testing you for all those other rare things, but not HIV.

Granny60

CDC web site used to list the chance of HIV infection as 1/400,000 for a single transfusion. I looked it up when I found out. a person that has had two transfusions the risk was listed as 1/40,000 and the risk continued to climb the more transfusions you had. I could never understand why the risk made such a change from first to second transfusion. doctors in our area have their head in the sand. People refuse to believe there are drug users, pregnant teenagers, homeless people..... the list goes on. PERFECT little small town ( backwards hick) denial mentality, don't you know.

You should know that the CDC used a single, discredited study for that number. I could go on, as I always seem to do

But if you want the particulars, I shall repost them.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Started Meds 2 months after diagnosis after all genotype testing was in. Undiagnosed for years. went through 11 doctors and 2 hospitals who all kept saying the same thing. The reason I was dying and had become a bed ridden invalid was because I had to have some type of cancer and they couldn't find it. You don't want to know how many tens of thousands of dollars in biopsies and scans and tests I had. After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

I know someone with a similar story and we have some similarities. My parent's, who live in Indiana, have a neighbor who's daughter is gay. As it turns out, she lives right down the road from me here in Louisville. She is a teacher. My partner is a teacher. Her partner got HIV from a blood transfusion. They didn't know what was wrong with her for a long time, because she didn't fit any of the "risk groups". She is a lesbian and didn't do drugs. They finally tested her for HIV.

I have found it interesting that I'm gay and my parent's neighbor is gay and we now live within a mile of each other in a totally different city from our parents. She's a teacher with an HIV+ partner and my partner is a teacher with an HIV+ partner. I've been wanting to contact her partner to talk to her about life with HIV, but I'm not sure how to do that. They are about 15 years older and I believe she contracted the virus in the 80's, so she's been living with it for a long time. I've been told she's doing well considering, but I was told she can't keep up with her neg partner like she use to. They traveled a lot and have now cut back on that somewhat. Well, the main point is no one thought to check her for HIV for a very long time, because she wasn't a gay man or IV drug user.

Very interesting. I am curious about your history. What were your numbers like during the period you were a LTNP? How often did you get tested? What happened in 2005 that changed your stats from LTNP to indication for treatment- was it a sudden jump in your VL or crash in your CD4 or was it a slow progression towards needing treatment around that time.

Also, did you think that you might never need treatment or did you think that you were just a slow progressor that expected that one day you would eventually need treatment.

Finally, is there technically any difference between a Long Term Non Progressor and a Long Term Slow Progessor, have they identified any genetic traits or other characteristics that these individuals have or are they classifying based on lab result history?

There was actually a documentary about it called "Meth". I've never done Meth but to hear it from those guys they got so horny that they didn't care who fucked them or how just as long as it happened. One partner wasn't enough either so at that point it's like playing Russian Roulette.

Hey Hellraiser, any idea where I can get a copy of that movie or who made it? It sounds very interesting I would love to see it. I went poking around a bit but I couldn't find anything- Meth is such a common term.

Started the same day that I was diagnosed; about three weeks after being infected (and while still undergoing a very unfabulous seroconversion). I know it is not the norm, but I don't regret it one single minute.

Each person's experience is too unique and not really applicable to what others may be going through.

Wish I'd have had a crystal ball, I would have started immediately, too, Rev. Especially now after all of the data I've read about the establishment of the latent reservoirs that apparently starts upon infection.

I was diagnosed very soon after contracting it but decided to "wait and see" how my body adapted because I'd read the VL was usually extremely high at seroconversion but could be expected to decline rapidly in a short period of time. When it didn't, I started (based on current guidelines and Dr. recommendations).

btw: what are you doing with this information? Almost sounds like research

I started treatment a little over a year after being diagnosed. I was infected on April 9, 2005 and started meds in December of 2006. My declining numbers were the main cause. I remember my initial labs being Cd4 of 492 with a high viral load. If I remember correctly my peak in Cd4's was 600+, but it collapsed pretty fast. In October of 2006 my labs came back showing my Cd4's had dropped to 103. I think it was stressed induced really. I had a lot on my plate back then.

If I had it to do all over again I would have went on treatment sooner. I didn't handle treatment so well in the beginning, in my opinion, because I also had to take bactrim. The Atripla and bactrim together taxed my kidneys heavily and I was constantly having issues with some kind of levels, I can't remember now.

btw: what are you doing with this information? Almost sounds like research

I became interested initially because there is another user on this forum who's experience paralled mine. We were infected at the same time, we had similar lab results, we were of a similar age. He (and I) started doing a lot of research. His posts posts were articulate, intelligent and well argued. We came up with very similar information. A few month ago after reading a blog post by an MD advocating early treatment on another site he decided to start treatment. I remember reading the very same blog and was not at all convinved so I didn't and at this point our paths diverted. I started thinking about all the factors involved in making such a huge life altering commitment. I was curious so I made the poll.

At first I thought it could be useful for some sort of research however as several others pointed out, there is a flaw in the survey- namely that I did not design the poll to delinate between actual time of infection and time patient became aware of the infection (as many posters don't know the exact time of their infection).

So the goal then became to get a conversation going and hear about the wisdom and perspective of those who have been here before as well as that of the newly infected who are currently facing these decisions. In this respect I think the thread did pretty well.

Hey Hellraiser, any idea where I can get a copy of that movie or who made it? It sounds very interesting I would love to see it. I went poking around a bit but I couldn't find anything- Meth is such a common term.

I haven't started any treatment with regards to pills, IVs or otherwise prescribed things. I'm seeing a 4th specialist this week and I heard the term "controller" last week from the 3rd guy I had seen. It's pretty early on in my infection and my VL after 4 months was below 1000. If my next test is again below 1000 (and they're estimating it should be below 500 if the trend continues) then again no medication for me.

I've been trying to understand the concept of a latent infection and how HIV can "hide" and affect other parts of your system. A lot of scary shit out there, for sure, but so far my team of docs are 3 for 3 in saying that it's way too early for meds and that I'm not a good candidate for any therapy at the moment.

This whole subject of being a potential controller is interesting even though I need to be infected for a full calendar year before being officially diagnosed that way.

I haven't started any treatment with regards to pills, IVs or otherwise prescribed things. I'm seeing a 4th specialist this week and I heard the term "controller" last week from the 3rd guy I had seen. It's pretty early on in my infection and my VL after 4 months was below 1000. If my next test is again below 1000 (and they're estimating it should be below 500 if the trend continues) then again no medication for me.

I've been trying to understand the concept of a latent infection and how HIV can "hide" and affect other parts of your system. A lot of scary shit out there, for sure, but so far my team of docs are 3 for 3 in saying that it's way too early for meds and that I'm not a good candidate for any therapy at the moment.

This whole subject of being a potential controller is interesting even though I need to be infected for a full calendar year before being officially diagnosed that way.

Something that is getting attention right now in the HIV medical community is the concept that stopping/slowing the initial reservoir creation process may be a potential step for curing later on. I was infected for a long time prior to starting treatment so that information has not been welcome for me. C'est la vie.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I started about 5 years after diagnosis. I was diagnosed early on in my infection but waited until I got close to the guidelines to start meds. I started a little earlier based on what I read on here and conversations with my doctor. It has been about a year now and I was undetectable in a month after starting.

Saw my 3rd specialist again today. Drew 6 vials of blood for 6 different research tests (I consented). Won't get my november results back until next week but if my VL continues to drop and my CD4 remains around 750 or better, he is going to recommend my case to some studies even through by the book I can't be called a "controller" until after a year of near undetectable VL (or something along those lines, I'm paraphrasing). Had another genetic screen as well to confirm the last one.

But he again recommended against any meds at this pointand sent that message to my primary who agreed pending the outcome of the current blood tests. Keeping my fingers crossed.

Last I heard she still had T cells in the 1800 range with an undetectable viral load and no meds@! Someone needs to bottle whatever it is she's got. I want some of that.

Is 1800 CD4 cells desirable? That is our of the normal uninfected range (500-1500). If you go to far in the other direction then you run into problems as uncontrollable cell growth (cancer, specifically Lymphoma) and very high levels of inflamation from an overactive immune system. This might not be a desirable state either. Of course this might just her 'normal' for her immune systems as we are all different to some degree.

Having no viral load in the plasma is certainly a good thing however I wonder if the disease is somehow interfering with normal cell signalling and keeping the immune system (over)activated.

Is 1800 CD4 cells desirable? That is our of the normal uninfected range (500-1500). If you go to far in the other direction then you run into problems as uncontrollable cell growth (cancer, specifically Lymphoma) and very high levels of inflamation from an overactive immune system. This might not be a desirable state either. Of course this might just her 'normal' for her immune systems as we are all different to some degree.

Having no viral load in the plasma is certainly a good thing however I wonder if the disease is somehow interfering with normal cell signalling and keeping the immune system (over)activated.

She sometimes has reported T cells in the 1100 range, I'm not sure of her exact fluctuations but I do remember reading that they got as high as 1800. I don't think they're always at that level but you do bring up a good point that too much can maybe also be a problem, not necessarily in her case.

I believe there have been studies of elite controllers and of slow progressors that have found elevated inflammation markers , as is the case for most if not all others with HIV.

She sometimes has reported T cells in the 1100 range, I'm not sure of her exact fluctuations but I do remember reading that they got as high as 1800. I don't think they're always at that level but you do bring up a good point that too much can maybe also be a problem, not necessarily in her case.

I believe there have been studies of elite controllers and of slow progressors that have found elevated inflammation markers , as is the case for most if not all others with HIV.

Last year she told me she had over 2000 tcells - she is a mutant . And yes, there is inflammation even in HIV controllers.

nychope1

Hello folks... just wanted to chime in. My one and only blood work since testing positive two weeks ago came in as cd4 525 and vl 5200. I didn't do another test before starting on Atripla two days ago. I wonder if I should have waited a few weeks and have another blood work done. My doc is the head of the ID dept at a well known hospital in NYC and has been around a long time so when he said that if it was him he would start on meds I didn't hesitate. What ya ya'll think?

I became interested initially because there is another user on this forum who's experience paralled mine. We were infected at the same time, we had similar lab results, we were of a similar age. He (and I) started doing a lot of research. His posts posts were articulate, intelligent and well argued. We came up with very similar information. A few month ago after reading a blog post by an MD advocating early treatment on another site he decided to start treatment. I remember reading the very same blog and was not at all convinved so I didn't and at this point our paths diverted. I started thinking about all the factors involved in making such a huge life altering commitment. I was curious so I made the poll.

It looks like you were infected about a month before me. I started Atripla as soon as I found out I had the virus. I started getting sick (fever, night sweats, swollen lymps) and told the doc, you better give me a VL test instead of an antibody test because I think I'm in seroconversion. I was right and immediately, started taking the pills. A week later, all was normal, even the swollen lymp nodes were gone. But still it has taken me over 6 months to recover from that +10 million VL. Being a veteran I only pay a small copay for what I need through the VA. No dealing with wait lists and all that nonsense, so why not. Hopefully once ObamaCare fully kicks in, everyone in the US will have better access to the needed medications, either through Medicaid or whatever insurance plan you have.

nychope1

I think it's too late to back out now that you've made the decision and started on meds. Stick to them as prescribed and things should go well.

I suppose you may be right. For those who are new to this it is a strange thought having to take medication for the rest of one's life. Except for feeling slightly out of sorts the Atripla hasn't had any horrible effects on me thus far but it has only been two days. You can't help but think how long you could have gone without needing anything. Now it's a goal never have a cd4 below 500. It took getting this f'n thing to wake up. Please be careful out there... this is not fun!

Logged

Granny60

I suppose you may be right. For those who are new to this it is a strange thought having to take medication for the rest of one's life. Except for feeling slightly out of sorts the Atripla hasn't had any horrible effects on me thus far but it has only been two days. You can't help but think how long you could have gone without needing anything. Now it's a goal never have a cd4 below 500. It took getting this f'n thing to wake up. Please be careful out there... this is not fun!

Lots of people take meds for something every day. diabetes, high blood pressure, can't stand the neighbor and her yappy little dog next door, you just get used to it. The great thing about starting early is that you are keeping your immune system and body from being trashed big time. Lots of us were totally trashed before we ever started meds. Your chances of having a great life without sucky things happening to you are now a lot better than a lot of us because of your early treatment. Good luck and I hope things keep going great!

what Gran said lots of people take meds every day. don't forget too those taking anti-depressants and anti-psychotics. I'm just glad that I don't have to stick myself and bleed several times a day like my friends with diabetes who test and inject insulin. Taking a few pills with dinner isn't such a bad thing when push comes to shove. It's a heckuva lot better than spending time in a hospital near death.

LOL what Gran said again. I recently got new results and for the third time in 20 years I had over 300 cd4s! WooHoo! of course it was only 308 but as long as their at 245 or more I'm happy. Having had single digits, just being over 200 is good news. Besides it's not necessarily how many you have, but how well they work. My average tcell count over the last 10 yrs has now risen to 184 with these >300 counts and has kept me out of the hospital for 13 yrs

Logged

leatherman (aka mIkIE)

chart from 1992-2013; updated 2/09/13 Reyataz/Norvir/Truvada

Granny60

what Gran said lots of people take meds every day. don't forget too those taking anti-depressants and anti-psychotics. I'm just glad that I don't have to stick myself and bleed several times a day like my friends with diabetes who test and inject insulin. Taking a few pills with dinner isn't such a bad thing when push comes to shove. It's a heckuva lot better than spending time in a hospital near death. LOL what Gran said again. I recently got new results and for the third time in 20 years I had over 300 cd4s! WooHoo! of course it was only 308 but as long as their at 245 or more I'm happy. Having had single digits, just being over 200 is good news. Besides it's not necessarily how many you have, but how well they work. My average tcell count over the last 10 yrs has now risen to 184 with these >300 counts and has kept me out of the hospital for 13 yrs

Hey Mickie, Great to hear your numbers are that high now too. As you know, the longer you have had this crap, the longer it takes to get there. I'll bet you'll see a faster climb ^ now!

Logged

nychope1

You guys have such resilience and positive attitudes. Congrats on the good numbers leatherman.I look forward to turning an attitude corner and start feeling mentally better. Three weeks into this and I am still quite run down mentally more than physically. And this Atripla is not helping much but it's only my third day. I think I'd rather just take a few more pills in the morning with my vitamins if this overall shitty feeling doesn't subside. I think it was a mistake to stay home this week to adjust... I am am better off busy at work.